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What now…
Hi everyone,
I hope everyone’s holidays were happy ones…ours were :)
As I posted we went to Mayo’s just before Christmas for my 9 month check up. The oncologist was letting me off of the bonescan, but I had the chest CT, pelvic MRI, labs and a still film of the bone tumor in my shoulder. Here’s what they found…
The shoulder tumor is almost 6 cm but they are sure it is benign.
The lung nodules seem to be stable and they didn’t ask to biopsy.
The neo and kidneys seem to be fine.
They found a bone lesion on one of my hips in the MRI. They wanted to do a CT guided biopsy of it, but the CT couldn’t pick it up yet as it is only 1 cm.The plan has been to wait a few weeks – do a bonescan to see if there are any other lesions. Biopsy the lesion. If it’s the only one we could do targetted radiation. If there are more he leaned towards systemic chemo. Seemed like an ok plan then, but I have been wondering…
I think I would like to get a full scan within the next week or two rather than giving this more time to become more intimidating. If it is the only one – then we can continue the plan, but if it isn’t we could start treatment sooner which would be a bigger benefit to my survival. Right? I sure would like some thoughts here if you have something to share.Today I get my 1st B12 shot :( My B12 has been as low as 126. I get confused alot and easily, can’t remember lots of stupid stuff, and feel way off. My husband fears dementia is near and has begged and bribed me to get a shot. (He can’t believe with all I went thru since DX that I fear what he calls “a little shot”)This weekend I get a new coffee table and end tables!!
My shrinky dink lady wants me to have a warrior name for this fight, that it will help me mentally. Zena is overdone, and I need some suggestions.
Thank you, and God Bless, Holly -
32 Replies
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Non invasive is gaining usage. I like it better than superfical for the reasons you listed. Having seen both sides of the coin I can tell you that there is nothing superficial about dealing with non invasive blc.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Lisa, I have been reading about Bladder cancer since 2001 and feel far from knowledgeable. Ask for clarification when a post is unclear. What is difficult is to sort out what is the information you need for your circumstances and what is irrelevant.
Volunteer Coordinator
ABLSCHey don’t feel bad…i didn’t say i understood it…i just know what it is!!
:PHi Lisa,
I do hope you are feeling better – the adjustment to chemo can be rough.
And please don’t get yourself distressed if you feel knowledgable or not. Heaven knows I know very little, but I try to be generous of heart and to be understanding ( even if I don’t really understand) LOL We just help each other down the road of recovery. Many times I feel like I ask stupid questions, but fortunately, the wonderful folks here ( like Pat and Zach – just to name 2 of many) are very sincere and helpful. Admittedly I do not post to threads I do not have anything to offer.
As far as my current status, my insurance has me hooked up with Northwestern hospital in Chicago rather than Mayo’s. In early March I will be meeting my new dr’s and getting the MR Urogram, etc. Sure hope they believe in treating mets immeadiately vs when they cause pain. Just know I am doing ok :)
Prayers to you and God Bless, Holly
PS Thanks for the B/C Ratio info folks :)
Lisa, don’t feel stupid about not knowing everything about this. I feel the same way when I read about some of the superficial treatments–I just don’t know anything about them, and, just between you and me, I don’t want to. I want to be knowledgeable, but only knowledgeable enough in some things to know that there are others more expert who can answer questions and concerns that I can’t.
While I’m on the subject, I wish that there was a better term than “superficial.” It sounds like it’s synonymous with “minimal,” when of course it’s not.
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein
Hi Holly
So glad you have had what seems to be good news.Thanks for all your support and prayers over the last few months/weeks.I feel really stupid compared to Patricia and some of the others in that I only understand less than half of w hats being said in most of these posts.However I really hope the treatment and diet changes continue to make a difference and help your prognosis.
Lots of love Lisa xI think its the BUN/Creatinine ratio……..
What is a BUN/Creatinine ratio?
Occasionally, a doctor will look at the ratio between a person’s BUN and blood creatinine to help them determine what is causing these concentrations to be higher than normal. The ratio of BUN to creatinine is usually between 10:1 and 20:1. An increased ratio may be due to a condition that causes a decrease in the flow of blood to the kidneys, such as congestive heart failure or dehydration. It may also be seen with increased protein, from gastrointestinal bleeding, or increased protein in the diet. The ratio may be decreased with liver disease (due to decrease in the formation of urea) and malnutrition.Having said that……you’ve had a major change in diet over the past weeks…so don’t read anything into to it yet…………..xxxooo Pat
Hi everyone,
Well, we have completed the imaging and labs so heres the run down…
Bone scan – does not show the hip lesion or any other lesions.
PET CT – all ok except that they cant rule out neoplastic invasion in the neobladder collecting system.
Brain scan – found a prominent polyp but no evidence of metastatic disease.
The labs from 2weeks ago show continued increase in the alkaline phosphatase (sp?) so they took labs again yesterday.My B/C ratio is also high – not even sure what that is lol
My local oncologist feels single bone mets are unusual. He suspects others will eventually show up. He also is reluctant to believe a single 1 cm bone met could effect my lab values, so he is suspicious of my liver.
All in all it is better than I prayed for :) We are sending my imaging to Md Andson for review and also my local oncologist will consult with Drs there as to what they recommend at this point.
I am scheduled for a repeat MR Urogram and urine cytology the 12th of Feb.Any ideas?
Thank you for each and every prayer and good vibe. God bless,
WARRIOR ANN ATHENA
ps. The dietetic chsnges are still going….I have switched our food to being apx 95% certified organic. Mostly fruits, veggies, and plenty of whole food vitamins and supplements. I have made a better balance of the acid/alkaline foods as well.
Ms. Ann Athenia,
Good to hear you are making some big changes to your diet…this could be very benficial for you. I have worried for several years that my spouse would come down with some type of cancer…he just eats whatever he wants…and so I added selenium to his vitamins…as that is suppose to fight cancer…he and I have both taken viamins for years…at the minimum a multiple but usually we have a total of 8 or 10 we take every day.
Since I was dx’d with BC, and went on chemo and then all the drugs from surgery, I have cut way back on mine. I am now back to taking a multiple, Fish oil twice a day (ammeno fatty acids) lysine, sometimes a “C” or zinc when I sense a cold might be coming on…and somtimes a multiple “B”. And I definitely eat a much improved diet since surgery. I make it a point to get my protein. I eat lots of fruits & veggies, chicken, tuna, and very little bread, sweets or red meats. I suspect that is why I haven’t gained back the 20 pounds I lost when I first come home. Anyway, I applaud you for taking the steps to improve your diet. I think you will be very glad you did. The only down side is that it cost us more to eat healthy. Hugs to you. Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightHi Everyone,
Well, after much thinking and prayer, I have moved ahead facing this newest leg of my bc journey. My local oncologist has agreed we need current imaging and labs to assess where I am now. He has also agreed to confer with a few leading drs (of my choosing) for recommended treatment. From there we will go. I don’t believe I will be seeing the other oncologist again.
I also have been getting a crash course in nutrition, supplements and acid/alkaline not only for everyone, but especially for those who are dealing with cancer. I have been a Starbucks and Taco Bell Junkie for years. Occaisionally I took a vitamin, but I was clueless that it all plays into maintaining an environment within that would fight cancer. Or feed it.
So last week Saturday I changed it all….I gave up Pepsi, fast food, and junk food. I have only consumed certified organic foods – mostly raw fruits and veggies. The majority of which is considered “alkaline” – as I have seen much info that cancer cells can be smothered that way.Supplements, Noni and POM juices, and other items have been added to help that along. What a week this has been…And my neobladder has been just fine. Maybe even better. I was fearful the neo would go thru shock, but it has been a very pleasant change.
Does everyone or anyone here pay strict attention to their diet, supplements and PH levels? Did anyone change their diets so drastically too? Any suggestions or personal experiences I may find helpful?
Maybe it is a given to be knowledgeable on these matters, but I have not been. Was that normal? LOL God Bless, Holly AKA ANN ATHENA :)Some people have Transcobalamin II deficiency— which they have an impairment in intestinal absorption of B12. This disorder of plasma B12 transport plays an important role in binding B12 within the enterocyte (intestinal cell) prior to its entry into the circulation.
Transcobalamin II deficiency— which is another reason for B12 deficiency— can be successfuly treated by bypassing the normal physiology by giving B12 injections, which ensures B12 delivery into cells. This can occur if a person has a congenital defect of the distal ileum (last part of the small intestine), or diseased ileum (either from a chronic disorder [ie. Crohn’s disease] or surgical removal). These people cannot swallow pills for absorption—- sublingual route and patches—need to be tested in this population—-
The Mayo Clinic Proceedings spotlighted the uMMA test as preferred because of convenience and sensitivity.41In recent comparative studies, the uMMA test was found more sensitive than the serum B12 assay5 or the SMMA test.20
A study found that patients with neurologic disturbances excreted larger amounts of uMMA than those without neurologic disorders42 and recommend the uMMA assay use to attenuate an important cause of permanent neurologic disability.43
The uMMA test reflects tissue/cellular vitamin B12 deficiency and is the leading candidate as the “gold standard” assay for identifying tissue B12 deficiency.19,21
MMA stands for Methylmalonic Acid…………….Pat
Hi,
Just to clarify my own experience here….I took oral B12 for a few months and my levels dropped to 196 then 146. I went to 2500 mcg sublinguals daily aqnd it dropped further to 126. I have decided the shots are better for me. Holly
[quote author=Patricia link=topic=1650.msg12539#msg12539 date=1200451947]
without the ileum the only way to absorb Bl2 is by shot or sublingual and now they apparently have a B l2 patch which absorbs directly into the blood stream….however the only one approved by the FDA is in shot form……….Pat
[/quote]Hi, Pat,
Without the ileum, B12 cannot be absorbed from food. However, the B12 in pill form can be absorbed in the stomach. It is best to take higher dosages because the absorption rate is not efficient. Sublinqual probably gets you more, faster, but pills do work just fine. I was told by my urosurgeon to take a daily vitamin pill that contained B12 after my RC/ileal neobladder surgery. Because my B12 dropped considerably after my surgery, I also take a separate B12 pill to supplement the daily vitamin pill. I know other neobladder patients that have been able to keep their B12 levels high by using the oral pill form. Here is a quote from and a link to an article from the Family Physican Journal that addresses B12 absorption, deficiency, and treatment:
“Because most clinicians are generally unaware that oral vitamin B12 therapy is effective,17 the traditional treatment for B12 deficiency has been intramuscular injections. However, since as early as 1968, oral vitamin B12 has been shown to have an efficacy equal to that of injections in the treatment of pernicious anemia and other B12 deficiency states.9,17-19 “….
“Although the daily requirement of vitamin B12 is approximately 2 mcg, the initial oral replacement dosage consists of a single daily dose of 1,000 to 2,000 mcg (Table 4). This high dose is required because of the variable absorption of oral vitamin B12 in doses of 500 mcg or less.19 This regimen has been shown to be safe, cost-effective, and well tolerated by patients.19”http://www.aafp.org/afp/20030301/979.html
Since B12 in pill form is an over-the-counter product, I do know what you mean about the shot form being the only one approved by the FDA.
My best to you,
LindaWwithout the ileum the only way to absorb Bl2 is by shot or sublingual and now they apparently have a B l2 patch which absorbs directly into the blood stream….however the only one approved by the FDA is in shot form……….Pat
Hi, Holly,
I am so glad you listened to your husband and got the B12 shot…126 is well below the recommended reading for B12. Anemia caused by low B12 is very serious and can cause irreversible nerve damage if low levels continue for long, so keep your B12 above a 200 reading if you can. I always get a sore tongue whenever my B12 gets low. You might also like knowing that the pill form of B12 is very effective for most people as well as costing less and not as painful as the shot. One of the good thing about the pill form is that it can be absorbed in the stomach instead of like the B12 in food that depends on the small intestine to extract it. Here is a website that gives good, concise info about B12 deficiency:
[ http://www.webmd.com/a-to-z-guides/vitamin-b12-deficiency-anemia-topic-overview ]
I wish you good results with your bone scan and the treatment plan that you decide upon.
My best to you,
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